Life…As I See It

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We’ve heard it said that the Bible is archaic, outdated, non-applicable to modern life, etc. Many have struggled with some form of the question, “Can the Bible really apply to my life?”

That’s where I am coming from today. After months of agonizing over what to study (in the Bible), what devotional to use, what minister to listen to, I found myself simply where Satan was happy to have me…not in the Bible at all.

This morning I sat down at my desk, turned on my computer, and logged in. While I was waiting for the operating system to bring me to my desktop, I thought about what I “needed” to get done. And then I heard a still small voice telling me that I needed to study God’s Word. I argued back, “But I haven’t found a study I like, a minister I can trust…” And the God said, “You have MY Word.”

“Yeah,” I continued to argue, “but I don’t know what to study in the Bible.” Knowing that I should be in the Word, knowing that God has blessed even those who open their Bible, close their eyes, and choose their Bible study like playing pin the tail on the donkey…I grabbed my Bible. Before I could open it, I had to run a dust rag on the zipped up cloth Bible purse. That was a sad commentary.

Once I’ve dusted it off, I open my Bible and it falls to one of the gospels where I glimpse the title Jesus’ Birth and Preparation for Ministry (at least that’s what I think it said). I mutter to myself. “Oh goodie…a Christmas story.” Yet, I concede that if this is where God wants me to study His Word today, I guess this is what I study.

So, I adjust my hold on the Bible to bring it closer to me and a big chunk of pages flips by with a thud…now I’m suddenly in Acts. The title before me is The Storm at Sea. I guess I hadn’t figured out I was in Acts because as I started reading, I thought this was the story where Jesus walked on the water. It mentions sailing behind the island of Cauda. I glanced at the inset map and think, “Wow. Jesus walked all the way out there.” Yeah…no…wrong sea.

Acts 27:13-25 is a story about Paul. When I go back to the beginning of Chapter 27, I discover that Paul is a prisoner on his way to Italy. In verse 10 he politely warns them that “I believe there is trouble ahead…” I find this funny, at first read, because although he warns them of “…shipwreck, loss of cargo, injuries, and danger to our lives.” it doesn’t appear to be a strong Hollywood “We’re all doomed!” warning. Paul doesn’t appear to mention God and what transpires later in story leads to me believe that God didn’t want him to give them a wrath of God warning. God’s plan was for them to be shipwrecked. He provided a warning, but didn’t tip His hand. I can think of several reasons God might do this, but I rely on one single important fact….He is God…and His Ways are perfect.

Moving into the story…a light wind suddenly turns into a big storm that rages on for “many days”. The commentary in my Bible says this was October, which for starters was apparently not a good time for sailing the Mediterranean. They were unable to maneuver the ship and blown out to sea. It says “they gave up” trying to turn into the wind and just let the storm push them along. They did a bunch of sailory stuff. Eventually they threw their cargo overboard. Then they threw over their ship’s equipment and “anything else they could lay their hands on”. As the storm raged on they couldn’t see the sun or the stars (by which they navigated) and they gave up their last bit of hope. Blown helplessly more than 300 miles, they were hopeless, exhausted, and starving.

Now comes Paul in verse 21, gathering all the crew to say, “You should have listened to me…you would have avoided all this injury and loss.” He continues by telling them not to worry because they will not die. The ship will be lost, but God sent him an angel to assure him “for surely you will stand trial before Caesar!”

I pause for a moment to ponder don’t-worry-you-won’t-die-here-because-you’re-still-going-to-stand-trial-before-Caesar. Without further speculation, I conclude that Paul trusted God implicitly.

Verse 26 concludes the story, “But we will be shipwrecked on an island.”

Now I circle all the way back to the where I began…How does this apply to my life today?

Have I ever disobeyed God’s warning?

Have I ever sailed out into peril against even common wisdom?

Have I ever been swept away by the storms I got myself into?

Have I ever been way off track?

Have I ever felt helpless and hopeless after my sins had tossed me about in an endless storm?

Have I ever been spiritually starving?

Have I ever been spared by God’s goodness and mercy?

How many times could I have avoided all the injury and loss I brought into my own life through willful disobedience?

Has my life ever been shipwrecked at my own disobedient hands?

Satan enjoys tripping us up with our own egos. He whispers in our ears, “Oh, that story again. You already know everything there is to know about that. That story has nothing to do with your life.”

The Word of God still speaks Truth. It is so much more than mere written words on pages. It is not archaic, outdated, or inapplicable to modern life. What was true for those on that ship with Paul is still true. When we don’t heed God’s simple warnings, we end up shipwrecked. God knows what is ahead of every step we take. He gives us good guidelines in the Ten Commandments and further instructs us throughout the Bible. Nothing is a mere tale. The power of God’s Word transcends human thinking. No matter how many times we read a passage in the Bible, God will show us how to apply it to our lives. The more we obediently study His Word, the less we will be tempted to think that we know it all already.

WOW! It has been a very long time since I have posted anything to this blog. Long story short, I was beat down…and not only by my health. You know that saying, ‘No good deed goes unpunished.”. Yeah, well, I was living it. But that’s a story for another time…

According to some unfinished blog drafts, I started seeing a Rheumatologist sometime in late June or early July (2011). In September 2011, he sent me in to qualify for a new RA drug study (a JAK inhibitor). I flunked apparently and did not get to participate in that study.

From there, he started me on Methotrexate (a low dose of the chemo drug is used to treat RA). I had been on MTX for only 2 weeks when I went in for a 3-month blood draw for my Primary Care doctor. She was rechecking my sugar & cholesterol which had been elevated since the prior year. My PCP was thrilled to see my sugar and cholesterol were beautiful….and then she turned the page to discover that my ALT (liver enzymes) had nearly quadrupled. She felt a little better upon hearing that I was now taking MTX, but wondered if my ALT would stabilize or continue to get worse. That I would discuss the following week when I returned to the Rheumatologist.

The rheumatologist strikes me odd every time. He displays little emotion…make that no emotion. Just when I think he’s going to leave me on MTX, he says, “Well, it’s clearly not working for you, so we’ll try something else. We have many other options.” So, he writes me an Rx for Arava.

I follow up with more bloodwork about 6 weeks later. My ALT has returned to a normal level. During the visit, he asks me a funny question, “Are you still dropping things?” I gave him a puzzled look. He informed me that I had told him I had been dropping things. I find it very odd that I cannot recall #1 dropping things and #2 telling him that I was dropping things. So, I decide that from now on I will, to the best of my non-journaling self, keep better track of what’s going on from day to day…or as something happens.

A particular health app on my Android makes it easy to click the day, make a few notes, or check off some symptoms. It’s not an RA-related app (which I’ve asked my husband to write for me!), but it helps me keep track. Another good indicator of what’s going on with me is my internet search history. When I’m dragging tail and having to take 3-hr naps 4 days a week, I’m likely to Google “WTH???”.

So, for 4.5 months I kept track of how I felt. I found that every joint in my body…joints I didn’t know existed…ached…relentlessly. Excruciating heel pain (it feels like my heel bones are poking through my feet) that I had experienced in August while away in IN, was plaguing me 24/7. I was fatigued…taking those 3-hr naps I mentioned almost every afternoon. Driving was become a concern for me as I struggled to stay awake on any drive outside of town. I was accomplishing nothing on my daily to-do list and forgetting…and forgetting…and forgetting. I forgot to pay our storage rental every month and twice they locked me out. I even forgot to go to a meeting that I had scheduled. I was starting to feel depression creep in because I felt lost within myself. These were not normal things for me. And it bothered me… a lot.

At my April 5th appointment, I presented a page long list of the issues I had been tracking, along with several questions he had yet to answer or I had forgotten ask previously. He read them over…or appeared to. Oh…and I pointed out this weird moving object under my skin on my right knee. He felt both of my knees through my jeans and declared, “That’s just normal knee parts.” I reiterated that this “nodule”, I guessed…MOVED…around….freely. I could slide it around with my finger. He dismissed it. Grrrr.

Back to my 4.5 month of notes. He glanced it over and remarked, “Your complaints look more like Fibromyalgia than RA.” He paused to look at my file and said, “…But you have a positive RA factor, so you definitely have RA. (pause) But you can have both.”

Now, he moves to switch me from Arava to a different RA drug…an injectable. He mutters things about not knowing which injectable my insurance approves. According to him they each have their own drug they start with….but then he decides to just write an Rx for Humira because he “thinks” that’s what Cigna will approve.

I am so dumbfounded by his final remarks that I completely forget about the unanswered questions on my list. He tells me to continue taking Arava for 1 month WHILE I take Humira. BECAUSE…he wants me to see just how good I felt while taking the Arava.

Excuse me???

I’m suffering from a real disease and he treats me like I’m a freaking hypochondriac just because he hasn’t found the magic bullet potion that will work for me…and they’re may not be one from what I see of some RA patients. But don’t tell my PCP because she tells me that only the few people who have a bad experience with a medication post online. The other 95% are too busy living and enjoying their lives to post about their meds online.

What is completely fascinating is that I had stopped taking Arava about 4-5 days prior to my 4.5.12 appointment. I didn’t refill my prescription because I suspected he would switch me…again. I have been off Arava approx. 29 days…and I’m feeling better. Fewer joint aches. A lot less fatigue (I have only taken 3 naps in this whole time). My mind is clear. I can remember the things I need to do…and follow through on them. I’m actually getting things done that have been piling up for 5 months.

I left that appointment 3.5 weeks ago disgusted…and done with that rheum. Finding a doctor one can trust is really an exhausting job in Florida. So, I’m on the hunt. Not sure where to go…how far I am willing to drive…etc. I am even considering going out of state. I’ve got a couple prospects, but I want to proceed a little differently this time.

Right now, I’m feeling better than I have in MONTHS! I still have joint aches…I still have RA, but I’m not ready give up what I’ve gained…mentally and physically…just yet for the unknown side-effects of a new drug. I’m taking names, making lists, keeping track, and praying…and praying…and praying. One thing I have come to realize lately is that God has a plan in this…and I’m content in that.

In Part 1, I mentioned the general costs associated with renting an RV and listed additional expenses one might encounter. Here’s the details on those additional expenses:

Campground Fees: Prices vary greatly from campground to campground, as do your surroundings & amenities. You may more for premium sites with full hook-ups (electric, water, & sewer). I think I paid an average of $35 per night. I discovered late in my trip that some RV stops like Flying J offer free overnight parking. So you can pull in & sleep. They don’t have hook-ups, but in moderate weather it would be great.

RV Dump Fees: One thing you have to do periodically…or regularly with 5 people…is dump the RV waste storage tanks which are called the Black Water & the Grey Water. That’s toilet & shower/sinks, respectively. If you’re paying for a full hook-up site at a campground, it’s included in your overnight cost. If you’re parking in your sister’s driveway at night, you need to find an RV dump at a gas station like Flying J or at a campground. Flying J is $10 for non-card holder & $5 for card holders. Most campgrounds are $10.

I want to pause for a moment to tell you a funny story. We left my brother’s house in Birmingham on August 30th. I had dumped the tank in Chattanooga on Sunday morning the 28th. So, I figured there would be a dump station somewhere along the freeway early on our drive. I was wrong! We were 2 hours out of Birmingham & still no Flying J or other site. I was trying to locate a station with Gas Buddy on my Android to no avail.

I pulled over at the next rest area so I could do a Google search for a dump station. It was still coming up with nothing! I must have sat there for 15-20 minutes trying to locate an RV dump along our route.

Finally, I gave up & headed toward the rest area exit. Would you believe that there was a FREE RV Dump station right there at the end of the rest area??? We were 16 days into our 16 day trip. I laughed at only now discovering free RV dumps at rest areas (not all rest areas have these). And I thanked God for providing an RV dump when we really needed it. (I didn’t want to lug all that water waste on a 10 hr drive as it’s weight cuts down on fuel efficiency.

Propane Costs: To tell you the truth, I was terrified of the propane. I used it sparingly because I feared having to refill it and being clueless. What I discovered was that, at least at the Flying J, they refill it for you. I paid $3.09 per gallon. I used about 1/3 of the propane I started with in 18 days.

General Maintenance (oil changes, tires, etc. these are reimbursed): It is possible to have to take the RV rental in for an oil change if you are driving long distances. Tires, of course, can always be an issue. I had to take our rental in for a tune up…which is basically unheard of, according to the man at the rental center. It was annoying, but I didn’t have to pay out of pocket (Not typical! Usually you will pay out of pocket & get reimbursed at the end of the trip.)

Air for Tires: This can range from free to a few dollars.

Potable Water: This is generally free at RV stations like Flying J, campgrounds you stay at, and any home that you can get a garden hose to the water tank. There are some places that will charge for it, so my advice is fill it with free water whenever you can.

Generator: The on-board generator runs off your fuel and also has a meter. Cruise America charges $3 per hour of usage of the generator. You also have to add oil to it. It was one of those things I avoided out of fear of not knowing what I was doing. It isn’t a “necessary” thing in most cases unless you are camping in a primitive area and need to run everything electric at once or long-term. Most things in the RV run off an on-board 12-volt battery or the propane.

RV Toilet Chemicals: After you empty the black water tank, and before you use the toilet again, you have to put a toilet chemical into the black water tank. I think I paid $10-15 for a bag of 15 packets and I still have 4-5 left over that I left in the RV for the next person. The chemical indicated you could add it to the grey water tank as well, but Cruise America never advised me about this and I dumped the tanks regularly (daily as I could). This chemical packet breaks down all of the waste & toilet paper sitting in the tank and manages the odor as well.

RV Toilet Paper: It’s typically sold in small, 4-pks for about $2.99. It’s single ply and easily breaks down in the black water tank to avoid clogs in the system, hose or sewer drain.

Ice: Coolers are recommended for frequent access to cold drinks, so ice tends to be a necessity. It paid anywhere from $1.47 to $1.99 for a small bag and up to $3.99 for a large bag.

Drinking Water: Even though you connect the RV to city water or fill the water holding tank, it’s not considered safe to drink or use for cooking. So, I purchased both bottled water (for the cooler) and kept 2 gallons of drinking water on hand for cooking & rinsing tooth brushes. Bottled water was generally less than $4 per 24-28 bottles and the gallons were usually under a $1 each.

In my next RVing post, I’m going to talk about the things I really liked & some things that I did not like.

It all began a few months ago. Another homeschool mom who has her children enrolled in the same private school for unschoolers as I have mine enrolled in, asked if any other families enrolled in the group lived in an RV and traveled about the country.

Until that day, I hadn’t even considered an RV for our travel needs. And I’ve done a lot a traveling with my kids (with and without my husband). I really started thinking about renting an RV when I decided to take my 4 kids to Indiana. There is only 1 hotel where we were going. I’ve stayed there once. It wasn’t that great and now I would need two rooms at an outrageous $90 per night. (Trust me, the place is worth $35 TOPS!) After considering hotels outside the area (a minimum 30 minute drive each way), I started to wonder about renting an RV.

I didn’t know much about renting an RV, but I did recall Lisa Whelchel writing or talking about traveling for a year in a Cruise America RV. So, that’s where I went first to check it out. I then searched for other RV rental websites; contrasting & comparing prices & other details. Eventually, I decided to book with Cruise America.

So, that’s the long & short of how our RV adventure started out.

Along the journey, I had people everywhere we went ask me questions about renting the RV. Mostly people wanted to know how much it cost. In simple terms, you have a per night cost, plus a mileage rate. Of course, you have to pay for gas too. Oh, and insurance coverage is included in your rental fee with Cruise America (I can’t speak for anyone else, but this could be the standard in the industry.)

Imagine you have a headache. It’s bad enough that you fumble through the medicine cabinet for your typical pain relief choice.

Now imagine that the bottle of pain relief boasts “Reduces pain up to 20%”.

Ponder that for awhile, I’ll come back to it.

Last week, I finally had my appointment with a new (to me) rheumatologist. I haven’t formed an opinion of him yet…entirely. Communication is definitely better than with the other rheum. He seems to be staying educated & informed on rhemu stuff.

Still, the first treatment option he mentioned was Methotrexate. Uh, yeah. I wasn’t comfortable with Plaquenil (an anti-malaria drug), so I’m definitely not comfy with a chemo drug. However, he went on to tell me about the latest in RA treatments…JAK Inhibitors. He said he attended two different medical thingies for RA in that past year that discussed JAK Inhibitors.

So, he sent me home to do my research on JAK Inibitors. And this is where I come back to the 20% relief I mentioned earlier. I did my research…even called one of the drug manufacturers. It’s still in clinical trials (which he told me), but the news I found was interesting. There was all this excitement in the medical world because the JAK Inhibitor in trial for RA is showing a 20% relief.

I guess it doesn’t take much to excite doctors and pharmaceutical companies these days. Twenty percent? Would you bother to take that headache medicine if it only promised to relieve your headache up to 20%? I know I wouldn’t. I want 100% relief & I don’t think I would even notice 20% less pain.

To be fair, I researched it further and found that the ACR (American College of Rheumatology) has this % rating system. I’m not sure I understand it completely, but this new RA med has a 20%, 50%, 70% & a remission rating. That means that different people experienced different levels of relief at varying levels of dosages. (But it was the 20% relief that had the pharmaceutical company dancing a jig in the 1st article I found.)

Right now, I’m not sure where I fall on the optimism scale for JAK. On one hand, my pain is increasing weekly. But I’m not sure I’m ready for hard-core medications. I am especially not comfortable with taking anything without a plan. I know they want to be aggressive early on, but I just haven’t seen enough…or any…evidence that any of these drugs do anything. So this is all up in the air for me right now…which is fine.

Tomorrow, my regular doctor will be reviewing (with me) my latest bloodwork drawn earlier this month. I’m curious to compare it to last year’s. Then I will review that bloodwork again with the new rheum in about two weeks. He may order more bloodwork. Oh joy.

Worse than the pain is feeling like there are no good choices. No, there is something worse than that. Being frustrated by well-meaning advice-givers who don’t understand that Rheumatoid Arthritis is not “just” arthritis. It isn’t “just” joint pain or inflammation that can be helped X, Y or Z. It’s an auto-immune disease. My body is attacking my body and I am being tormented by all the miserable options to control it or modify it or live with it. And it’s even much more than that…

Yesterday, I had to make a journey to New Smyrna Beach. It’s easily 45-minutes (at 80 mph even). Knowing I would be making this trip, I planned to also stop at Sam’s Club. Even though gas prices & couponing keep me from going as often as I used to, we still keep our membership up-to-date. We do enough business to make our $35 membership worth it.

Just like everywhere else this summer, it’s H-O-T & m-ugh-y. Arizona State University once did a study to see if temperature played a role in driver frustration. It does. Go figure. And it was all too apparent yesterday. Each person was clearly in their own private hot & muggy hell and not willing to share their space. And not just on the road.

At some point in my venture around Sam’s, I encountered an elderly lady who was content to be in my way. I wasn’t really in a hurry, but it’s still annoying to be behind the oblivious…and the painfully slow. Still, I waited, trying not to show my annoyance.

I was just about finished loading the back of my SUV when that same slow elderly lady pushed her cart around to her driver’s side door…which was next to my passenger door. Again, she was in my way. I was just about to take my few grocery items to my passenger seat. I thought she was just parking her cart there…too slow & elderly to put it in the corral that was directly behind me. As I loaded my passenger seat via my driver’s door, I noticed that she was loading her passenger side, one or two items at a time from the cart. I have no idea why she was walking around the front of her car to do this, but she was.

As I finished, and prepared to take my cart to the corral (which I ALWAYS do & you SHOULD too because it annoys the heck out of the those of us who would never be so thoughtless to leave the cart just anywhere in the parking lot when the corral is right freaking there!!! ), I decided to do something simply absurd. I sweetly asked this elderly lady if I could return her empty cart for her.

Well, it was empty except for her purse (another big No-No I can’t believe women still do). She was making her way back to the empty cart to retrieve her purse and get in her car. I told her that I would return her cart for her as soon as she was done. I returned my cart and by the time I came back she was just making her way to her door.

“If you’re done, I’ll take your cart.” I said to her. I can’t tell you exactly what she said because I was surprised at how she went on and on to thank me for being so kind. As I took the cart, I noticed how good it felt to be patient with her, to do something nice for her. We had both been blessed.

Now, I didn’t tell this story to toot my own horn. I was in no mood to be nice to anyone in that muggy heat. I had been irritated by this same woman in the store. I had been mumbling unkind and bad words under my breath all morning. I had uttered more than one deep sigh, rolled my eyes, and passed horrible judgments on others.

But for some reason, I choose to show some things I wasn’t feeling…patience, joy, kindness…to name a few. I’m sure God was speaking to me even though we didn’t have one of those long, drawn out discussions where I argue with Him about why I shouldn’t do what He’s asking me to do. It was a quiet and very quick moment from, “Grrr…she’s in my way again and moving slower than pond water.” to “I’ll take your cart for you.”

I don’t know what that means…and don’t know how much to ponder it. I think I learned all I needed to learn in that moment. Christ really does give us the power…His Power, to choose love over all else.

Maybe fasting from social media doesn’t seem like a big deal. Maybe it even seems silly. And maybe if it had been my own idea to fast from social media it would be silly. But nothing God asks us to do is meaningless. Even when we don’t quite understand what or why He is asking of us, if He’s in it, there’s a good reason.

The actual fasting…abstaining from posting on Twitter & Facebook…was easier than I thought. At times I felt..for lack of a better word…tempted in the areas of Twitter and Facebook when I was reading a news report or blog and I would see the icons to “share” on Facebook or Twitter. If it was temptation, I didn’t entertain it long. Typically I would see the icons and say to myself, “Oh, darn. Can’t share it.” That’s about as far as I allowed that temptation to go.

Looking back though, I can see some outright temptations. The first came in the form of an email. It was a comment left on my Facebook wall. It seemed to be mocking me…mocking my fast…almost making me appear to be a hypocrite…a liar. I remember feeling very frustrated because it was the first day of the fast and already a misunderstanding was happening under my nose and I felt helpless. I vented to my husband, but I knew I had to let it go and deal with it after the fast. Funny. Today I read that comment on my wall and I see it in a different light. What had frustrated me on Day 1 wasn’t even worthy of a reply 22 days later. I had been misunderstood, but 22 days later I just don’t care.

Other times during the fast I would click on a news link or some other link of interest only to be thrust into Facebook. I would quickly close the tab. Again, I didn’t let temptation grab my attention.

Several times I received emails that wanted me to go to Facebook for one reason or another. I had to pass on some seemingly good deals, extra points, discounts, etc. But I did it. I made a commitment to God & myself and I wasn’t going to blow it over the “chance of a lifetime”. Whatever I missed, I know that God can bring it back 100 fold if it suits Him to bless me in that way. He’s done it before. I didn’t sweat it more than “That figures…while I’m fasting.”

The only “regret” I had during the fast was not being able to Tweet the things my kids say. Those funny, silly, crazy moments I’m used to Tweeting are gone forever because my brain just doesn’t keep up like it used to. They said some pretty funny things during those 21 days, but still I’m content to obey God. I didn’t tell the world what my kids said for 10 yrs. I’m sure the earth is still spinning on it’s axis.

That’s not to say I didn’t miss connecting with everyone over those 21 days. I missed asking questions and getting feedback. I missed chatting about politics and homeschooling. It was especially tough not being able to participate in the church Facebook group for the fast (isn’t that ironic?). What made it tough was that I received every post to that group via my email. I didn’t read them all. I let God bring bring things He needed me to know to my attention as I would scan my email. I deleted the rest.

So, while I was fasting from social media, the world kept spinning. And I learned a lot…more than I can even put into words on this blog. I know that God was in it & He used it to teach me the things He needed me to learn.